How do you explain it all?

[Jenni]

Hi,

I've only posted a few times before but I've been wondering when and how to explain to my daughters about their condition.

To recap, I have identical twin girls who are 3 now. They were born at 32 weeks and were both diagnosed with Hydrocephalus at 3 weeks old. They believe it was caused due to a brain bleed brought on by their prematurity.

Anyway, Abby needed a shunt as her hydro is moderate to severe and Erin's is mild so no shunt is needed at this time. Both girls are going very well, meeting all their milestones and we haven't had any issues with Abby's shunt (thank God).

My question is primarily for the parents of children with hydrocephalus but would welcome any replies.

When did you explain to your child about their condition? Abby doesn't know that she is different because of her shunt. As we haven't had any major issues with her (apart from her regular neurgosurgeon appointments) it hasn't been a topic I've had to bring up.

Thanks.

Jenni :)

[LIZARD]

Hey, Jenni. :)

There is a book written for kids about this:

http://www.amazon.com/All-About-Me-my-shunt/dp/1412005965/sr=11-1/qid=1162471712/ref=sr_11_1/002-0120530-6232835

Years ago, there was also a book written for young kids called Just Like Any Other Little Beagle, published by the now-defunct Cordis Corp. You may still be able to get copies from the Hydrocephalus Association website: www.hydroassoc.org, or E them at info@hydroassoc.org.

As for any other suggestions, I'd broach the subject with simple terms they can understand and have several talks over time about it. Follow their cue and answer only what they ask, but make sure you let them know you're open to questions, and don't be afraid to admit to not having an answer. In that case, the best thing to do is to say, "I'm not sure, but I'll try to find out."

I hope this helps.


LIZARD, open to questions at anytime as well :)

[Braindrain]

Speaking only for myself, I found out about my hydrocephalus when I
was very young. Somewhere between 4-6 years old. The way I found
out was: I was sitting in the bathtub and I noticed a scar on my right
side (from my first VP shunt). I asked my mother about it and that's
when she told me about my hydrocephalus. I'd say 5 or 6 years old
would be a good time to explain it to them.

[Austinsmom]

Hi,
My son is now 18 and as I look back, all I can remember is that we talked about Austin’s Hydro freely, with him, with family, he always knew he had a shunt, he thought everyone had a shunt:) and when he was 3 he ran in one summer day looking down at his tummy he pointed just above his scar while pointing at his stomach ( My mind raced to how am I going to explain his scar, his shunt :eek: ) he pointed at a little freckle and asked what is this Mom ??:D I said a freckle, he said OH :D :D and he walked off :p
we just talked with him as it came... I do remember explaining to him what to tell other kids while he was at swim beach, I told him if they asked about his scars to tell them he had an operation . it was simple, it is just the way it is and kids like things simple.
Austin’s knows all about himself and when we talked here and there i would mention that he might have to have other operations to fix the shunt, or to add to the tubing when he grew tall. he always knew this and it helped him when the time came for revisions, in fact it helped us all. Just keep it light, simple, and age appropriate.
Hope this helps a bit
Hugs
Deborah

[kathleenandjoe]

My daughter is 5 and we just got the books Liz mentioned above. She knew she had a shunt at age four and we got a shunt doll (great by the way - Karen makes them to match your child if you send scar maps and pics http://www.karenskottage.org/SpecialAngel.html )for her to better understand. Emily (mom posts here too) and Becca (my daughter) are featured on her webpage!

It was at age four that she started asking questions about her shunt bump and NS visits/CTs. So I told her about the shunt and that not everyone has one. Then I pointed out people who did and people on here that have posted pics of hydro kids too.

Only now am I getting into it more with children's literature as we had another NS visit and an EEG. I am also covering seizures in the same manner as she has those too. I think 5 is a good age and they can understand things more in-depth. Then again - she came home and told me that a kid at school was absent today because he had to go to the doctor, get an IV, and a CT scan because he got hydrocephalus. I have a feeling that is not why he was absent!

It is good to inform her young - just not before she can wrap her mind around it though. That is why we only started with the doll and exploring her own shunt and scars in the process.

Hugs,
Kathleen

[MegNJaxMom]

I guess we talk about hydro and seizures everyday it seems! Megs is 2 1/2 and we have never hidden it... Jack (almost 4, her brother) has noticed her scars and asked, and he has witnessed many seizures and has a huge compassion factor... so we have talked about it from the beginning. I was diagnosed diabetic at age 8 and my parents never hid anything from me and I always felt more comfortable with myself and my diagnosis because of it. I want Megs to know that she has power because of her knowledge.... now channeling that power is a different topic! :rolleyes: Two year olds!:rolleyes: :p ;)

[Kristine]

Hi Jenni. I, too, have preemie twins, boy/girl 26 weekers. My son only had a very minor bleed, thank goodness, but my daughter had a pretty severe bleed (bilateral grade III). She was shunted at 4 months of age and has had one revision at 28 months. We have always talked openly about her shunt. I haven't gone into the details of trying to explain hydrocephalus yet, but just use simple terms. I think the way that I brought up the topic was while I was fixing her hair. I would say that I was being careful not to comb too hard over her shunt and things like that. And then one day when my husband hurt himself and got a scar, we just made comparison about Emily's scars and just briefly told her that she had a scar from her shunt surgery. We NEVER make a big deal about it and discuss it so matter of fact. She calls her neurosurgeon her shunt doctor and she knows that she has a shunt because she got sick when she was born (they know about their prematurity) and the wonderful doctor put the shunt in her head to make her better and that if breaks and she gets sick again, then she will have the nice doctor fix it.

She was just a little older than 3 years when she realized that not everybody had a shunt, too. She was upset one day and wondering why her dolls didn't have the same scars that she had. It was then that I began my search to find somebody to make a shunt doll. I found Karen (Kathleen posted the link above) and we talked back and forth about what I wanted and that is when she created her first shunt doll. I have her lots of pictures explaining the scars and what the shunt felt like when you touched it. She did a fantastic job of making the doll just like Emily.

I guess to sum it all up, my advice would be for you to just talk openly about the shunt and use simple terminology. Kids are really able to accept these types of things than we adults do. Good luck!

[Jenni]

Thank you all so much for your replies. I will certainly take all of your advice on board. I just don't want Abby to feel frightened about the whole thing. She is a nervous and sensitive child as it is.

Reading through the posts on the forum it occurs to me that there is so much I still don't know about Abby's shunt. It's a ventriculo-peritoneal (VP) shunt with a Medtronic Delta Strata valve. I've read that rainy days can cause some discomfort. As far as I know Abby is fine but lately she has been saying she doesn't feel well. I tell her to sit down and rest for a while which she does and then seems fine to go and play again.

We travelled to the UK and back last month so I wonder if the air pressure has effected her somehow? She doesn't complain of headaches. We go to see her neurosurgeon next week so it will be interesting to see what she says.

Thanks again everyone. I'm sure you will all hear from me again.

Love to you and yours.

Jen xx :)

[MegNJaxMom]

I forgot to mention that we also have a shunt doll. Right now I use it mostly to educate others. Megs just found her shunt the other day... She kept rubbing it and saying "I want it off." and "I can't reach it" (which she says when she can't do something, like take that bump off!) so I simply said "Megs that keeps you healthy so you can keep bugging Jack" and off she went! But I have seen her rubbing it again with a very curious look on her face.

[LIZARD]

"Megs that keeps you healthy so you can keep bugging Jack" and off she went!

:D :D :D

I wish my parents had said this to me 'cause I would have loved any insinuation that it was cool to give my sister her due! I certainly took enough from her. :rolleyes: Isn't it funny how the sibs who are the most annoyed with each other as kids turn out to be the best friends as adults? :)


LIZARD, who's gonna tell her this when I call her back today! :D

[Suecr]

We are not quite there yet, but we have educated her brother, i.e. careful with her she has a boo boo in her head (cyst) and also some extra plumbing. He understands and is very protective of her. I think she knows something is going on, she will feel it etc. but she would not comprehend now, delayed from brain damage.